Neurological disorder gets spotlight at upcoming walk

Head and neck scans from Dr. Ian Heger show chiari malformation.
Head and neck scans from Dr. Ian Heger show chiari malformation.

AUGUSTA, Ga. (WJBF) – A local woman is bringing a health walk to the CSRA in hopes of shedding more light on the rare, neurological disorder she and others suffer.   Chiari Malformation affects about 1 in 1,000 people or roughly 300,000 people have it.  One woman is living with it here and she wants to get the message out just so people know it exits.

“Like many others I never heard of it a day in my life,” Amanda Heath told NewsChannel 6.

She helps other people, but at the same time she’s in the fight for her own life.

“Migraines, passing out, being sick, severe fatigue.  I fell and bumped my head when I was in the hospital with food poisoning, what we thought. And I found out I had to have brain surgery for Chiari Malformation,” she explained.

Pediatric neurosurgeon Dr. Ian Heger said before MRIs were a thing in the 90s, diagnosing Chiari Malformation seemed weird.

“Many of those patients were thought to be crazy because a lot of complaints patients have are thought to be subjective,” said Dr. Heger, who works at Augusta University Medical Center.

He added, “They have headaches, they have weakness, they have numbness. It’s not something that a clinician can do a test.”

Head scans shared with NewsChannel 6 show Chiari Malformation in one of Dr. Heger’s patients.

“We all would expect the brain is supposed to be in the skull and the spinal cord in the spine.  What Chiari Malformation is is when, for different reasons, the lower part of the brain is poking through the hole at the bottom of the skull and starts entering into the spinal canal,” Dr. Heger said.

This means many patients don’t have enough room in their spinal canal, compressing the brain and spinal cord and altering the flow of spinal fluid.  Some are born with it and others develop it overtime.  The treatment, most often times is surgery.  And that’s when Dr. Heger said he makes the area look like it should.

“If we’ve done the surgery is there anything else we can do medically. I will pull out all the stops to improve that quality of life,” he said explaining how decompression surgery works.

Amanda had brain surgery at 32.  Post-surgery at 36-years-old, she is managing life too.

“I’m not as bad as others that I know that’s had 30 surgeries.  I’ve only had one so far.  Still have to have fluid drained every now and again,” she said.

Amanda is now an advocate for getting the message out about the illness she battles.

“Nobody really knows what it is and that just upsets me because we have everybody suffering and nobody knows,” she said.

There will be a Chiari Malformation a walk this Saturday.  It will be held at the Evans Towne Center Park in Evans.  Registration starts at 8:00 a.m. and the walk begins at 9:00 a.m.  You can pre-register here or contact Amanda Heath at 706.306.6318 or chiarigirl32@gmail.com.  The walk is free, but the minimum donation for t-shirts is $25.

Photojournalist: Mark Gaskins

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